FSHD European Patient Survey – A big THANK YOU to all participants

September 10, 2022 By Bine Haase

Thank you to everyone who responded to the FSHD European Patient Survey!
We had over 1100 respondents from 26 European countries, which is a fantastic response.
The survey showed what motivates people to participate in clinical trials, and what would put them off taking part. It also has shown what patients see as important results from clinical trials which will be important in designing any trial and what it measures.
The final report will be published in the next few months, both as a scientific paper and as a lay report, and further information will be circulated once these are available.
Once again, thank you for your time and commitment to research into FSHD!